Chris
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Hope something good comes of this 🙂
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Never heard of this either. Seems interesting. Does it help you or someone you know with FA?
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I also tried a few sessions because a family friend suggested it. No effect.
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An update from me.Quick info: I had FA about 7 years now and I walked/worked without support before I started etravirine. My condition is not severe as some and has been somewhat stable the past few years.
I just took my last pill for the day, concluding 4 weeks of taking etravirine 100mg twice daily. The effects were subtle, I think, until after 2 weeks in which my legs felt more stable/stronger. Mondays are usually my worst days but the past 2 weeks I just felt “ok.” No really bad days where my legs are really stiff or like jello. I thought it might be placebo until I concluded my 3rd week. I had just received an IV glutathione (antioxidant) treatment the day before and I really felt great. I was calmer while walking and again more stable, better posture and not awkward and jerky movements. My writing is still kind of slow but more fine-tuned and legible looking. My whole 4th week I felt the same with maybe small subtle improvements such as not needing a wide gait when walking and being able to keep my legs closer together. My movements standing up are more fluid and I feel my keyboard typing is quicker. I now also push myself to walk up the stairs without grabbing the railing, usually I can manage that but sometimes I need to grab it as a tip over a bit too sideways. I had another glutathione treatment yesterday but nothing significant of note. Maybe I’ll notice a big change tomorrow or day after. This past week has felt “weird” for me since I haven’t felt this good in a long time so I got used to feeling weak and bad. I keep hoping I don’t wake up with all these improvements being gone.
I don’t have improvements in speech but FA affects everyone differently so I’m being patient. I can accept leg improvements for now. My toes still also feel cold from time to time, contrary to the warmer feeling by others.
No side effects besides maybe my face and neck feeling “hot” at times but it’s not uncomfortable and it’s not a fever, I checked. I was paranoid in the beginning by checking my body temperature, pulse, etc. but I got into the rhythm of taking the pills and barely think about it. Going to get a blood test in the beginning of June.
I’ll try to update as often as I feel better in some way.
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After a few MRIs and other basic tests and my neurologist having a strong guess, I got a referral from my neurologist to meet and get a genetic test from a doctor specializing in genetics. He took 2 vials of blood and sent it out to a lab. A genetic counselor reached out to me with the results.
Ask a neurologist if they or someone else can take your blood and test it for FA.
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This seems like great news 🙂 I am still trying to get a prescription :/
I know symptoms and severity vary, but has anyone who is taking etravirine noticed speech improvements? Does it feel more fluid and easier to talk? Did family, friends, etc. make any comments? My speech is slurred as I’m sure quite a few with FA most likely experience.
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Pure CBD or some THC (psychoactive component of marijuana) in it as well?
I get 1 gram of oil in a syringe from my dispensary with about 1:1 or 2:1 ratios CBD:THC. I squeeze out a grain of rice sized bit of oil and dissolve under my tongue or around my gums.
I feel as if I don’t get the best from just CBD, but that might just be me. I would use it at night to maybe help you get a decent night’s sleep. The “when” just depends how you feel. You can take it 3 times throughout the day if you feel it working well and you need more. Depends on the person.
I use it at night, just in case I accidentally take too much and feel a panic attack, and knock out until my alarm rings. I haven’t used marijuana over the weekend and my legs got stiffer and I have been waking up a few times in the night the past few days.
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@shandrajamie do keep us updated if the active medication is any good 🙂
I was planning on doing this trial but it was close to the end of enrollment and I was still a temp at my job so didn’t want to start missing days here and there. -
@frankie-perazzola I got notified by email of the question you asked but couldn’t find it in this forum for some reason. I prefer sativa or hybrid. They say indica makes people less paranoid and relaxes them more, but not for me. I don’t know if it’s the FA, just me, or both but whenever an indica starts relaxing and “shutting down my body” (couch-lock), I panic and feel like my body thinks “Oh shoot, fight back!” Not a super enjoyable experience.
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My neurologist did not agree to prescribe it for me since he doesn’t have any experience/knowledge with HIV medication, so I will once again ask my primary care physician since she was open to the idea of me trying the medication and knew what the medicine was used for as soon as I asked.
Any updates from anyone else who has been trying it? Do you feel better, same, or worse? Anyone else have been able to get a prescription from their doctors? @shandrajamie do let us know what the researchers say 🙂 I’m hoping clinical trials are coming our way soon since this medication is already approved and we know new medication takes forever :/
Always look forward to this thread.
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I use medical marijuana since I was lucky enough to get a card in my state in the USA. Been using it for maybe 2 years. My FA sort of plateaued over the past few years. Not sure if it’s from the marijuana since I know it has neuro-protective and other medicinal properties or just because my FA decided not to progress, but the marijuana isn’t harming me so I don’t mind.
I tend to use gummies/edibles over night since they are more potent and will definitely knock you out until you need to wake up, so no restlessness at night. I’ll also smoke/vape/put some oil under my tongue throughout the day. Some strains/products definitely help with depressive symptoms since sometimes I’ll find something super funny and giggle or laugh to myself for the next hour, especially if I see a comedy film. Although sometimes it can just be any stupid thing I read!
Hope you’re able to get your hands on some medication soon @matthew-lafleur
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@gunnhild Please do let us know if you feel better 🙂
I read the article this week and was lucky enough to find this forum while reading up on it.
My primary care doctor said she is not against the medication since it should have little to no side effects, it has already been tested and approved a long time ago, but she does want me to meet with my neurologist first. Unfortunately, healthcare doesn’t move fast in the USA so it might be a month or 2 before I get an appointment but I will (hopefully) get a prescription soon and inform you all how it goes with me as well.
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I heard of Kratom but never tried it. Was considering it. It’s banned in some US states, I think, but I can buy it in mine.Supposed to give a good energy boost.
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@rogierbdx agreed. A few years is too much for many FA-ers. I’ve come to realize just how useless many neurologists are. They do a test to basically see if you got worse or not and then wish you luck and a handshake. My first neurologist would keep interrupting me and said that everyone here just had a “placebo effect.” He googled side effects and it was basically laughable because I don’t mind diarrhea and headaches as long as I get better. When I was waiting for a follow-up appointment time I heard him walk into a room and start off by saying “Sorry I’m late everyone. I had a patient who tried to get a prescription for a drug I never heard of.” They all laughed and joked around. No compassion whatsoever.
Go for more opinions if you can and preferably private and/or general doctors. That’s how I got my prescription. I’ll update everyone here tomorrow. It will have been a month now and I’m not dead from this “dangerous medication” as described by many doctors.
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@rich-ono Hi, yes. I got a prescription in Illinois. Someone in this thread got it in Louisiana I think. I went to maybe 4-5 neurologists and my primary and none would prescribe it. Finally got it from an “alternate medicine” doctor who worked for a big clinic and now has 2 private ones of his own. The key is not to go to doctors in popular or big hospitals/clinics. Try to go to a small clinic where a doctor can work with your daughter frequently.
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@simon16 I would say kidney and liver blood tests are the most important and maybe vitamin D and calcium but try to get all your insurance will cover 🙂
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That is great news! Are there any other side effects you’re feeling besides chills? Or did those already stop too? Was the blood test fine?
Thanks for the updates!
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Hi, @shandrajamie Which company is closest to starting gene therapy trials? Just wanted to read up more on them, if possible. I keep reading on all these promising companies and none of them seem close to a good treatment option. 🙁
Etravirine or some similarly altered version designed for FA specifically is probably the most hopeful option I’ve seen yet. Someone said one of the doctors mentioned trying human trials soon as well.
CRISPR is very exciting to read up on, but I agree. It is FAR away from becoming a reality. We can safely bet on medication and gene therapy coming way before that.
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Just wondering @michsmith05 if I may ask, what insurance or area do you live in? Hopefully my insurance will pay some of the cost if I can get a prescription this Thursday.